Possible CF Baby

[Fathertobe]

Hi. My Name is Greg and my girlfriend and I are going to have a baby and our doctor called to tell us that she carries the CF gene and I need to go in for a blood test. Upon hearing this news I always wanted a boy and that was all, however this changes everything. I want a healthy baby. Not knowing much about CF I am just wondering are babies with CF healthy? Can you live a normal life? Do insurances cover the cost? How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option?

 

[Fathertobe]

Hi. My Name is Greg and my girlfriend and I are going to have a baby and our doctor called to tell us that she carries the CF gene and I need to go in for a blood test. Upon hearing this news I always wanted a boy and that was all, however this changes everything. I want a healthy baby. Not knowing much about CF I am just wondering are babies with CF healthy? Can you live a normal life? Do insurances cover the cost? How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option?

 

[Fathertobe]

Hi. My Name is Greg and my girlfriend and I are going to have a baby and our doctor called to tell us that she carries the CF gene and I need to go in for a blood test. Upon hearing this news I always wanted a boy and that was all, however this changes everything. I want a healthy baby. Not knowing much about CF I am just wondering are babies with CF healthy? Can you live a normal life? Do insurances cover the cost? How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option?

 

[LouLou]

You should post this under Family - you'll get a lot more people looking at it that can relate and give you good answers.

My advice is to find out if you are a carrier. If you are not a carrier there is pretty much no chance the baby can have cf. (The small chance lies in the fact that you could have a mutation that is yet to be identified). Make sure to have the 'extended panel' (tests for 85+ mutations) test. There are 1400 mutations of the cf gene.

 

[LouLou]

You should post this under Family - you'll get a lot more people looking at it that can relate and give you good answers.

My advice is to find out if you are a carrier. If you are not a carrier there is pretty much no chance the baby can have cf. (The small chance lies in the fact that you could have a mutation that is yet to be identified). Make sure to have the 'extended panel' (tests for 85+ mutations) test. There are 1400 mutations of the cf gene.

 

[LouLou]

You should post this under Family - you'll get a lot more people looking at it that can relate and give you good answers.

My advice is to find out if you are a carrier. If you are not a carrier there is pretty much no chance the baby can have cf. (The small chance lies in the fact that you could have a mutation that is yet to be identified). Make sure to have the 'extended panel' (tests for 85+ mutations) test. There are 1400 mutations of the cf gene.

 

[Scarlett81]

Don't start worrying and looking at all the scenarios that could come up. Have the genetic testing first-make sure your insurance covers the extended panel gene testing-like Lauren said. If it doesnt, pay for it somehow. People get the smaller panel testing and then are dissapointed to find out later that they are in fact carriers, b/c the small test didn't find it. So get the right test, and believe me, doctors don't always offer the test we're talking about-you should bring it up.

Get more facts first. If you aren't a carrier and you and your spouse are worrying endlessly, thats not good for the baby. And it may be needless worrying.

And on the postive side, if it is cf-while you won't be happy about that of course-it is livable. Look and Lauren and myself-we're in our 20s with spouses, homes, normal jobs, and pregnant! Our lives are more complex and we need more time to take care of ourselves, but believe me its a life worth living and cf is not the biggest thing in our lives. So don' t worry-whatever happens, it will be ok.

 

[Scarlett81]

Don't start worrying and looking at all the scenarios that could come up. Have the genetic testing first-make sure your insurance covers the extended panel gene testing-like Lauren said. If it doesnt, pay for it somehow. People get the smaller panel testing and then are dissapointed to find out later that they are in fact carriers, b/c the small test didn't find it. So get the right test, and believe me, doctors don't always offer the test we're talking about-you should bring it up.

Get more facts first. If you aren't a carrier and you and your spouse are worrying endlessly, thats not good for the baby. And it may be needless worrying.

And on the postive side, if it is cf-while you won't be happy about that of course-it is livable. Look and Lauren and myself-we're in our 20s with spouses, homes, normal jobs, and pregnant! Our lives are more complex and we need more time to take care of ourselves, but believe me its a life worth living and cf is not the biggest thing in our lives. So don' t worry-whatever happens, it will be ok.

 

[Scarlett81]

Don't start worrying and looking at all the scenarios that could come up. Have the genetic testing first-make sure your insurance covers the extended panel gene testing-like Lauren said. If it doesnt, pay for it somehow. People get the smaller panel testing and then are dissapointed to find out later that they are in fact carriers, b/c the small test didn't find it. So get the right test, and believe me, doctors don't always offer the test we're talking about-you should bring it up.

Get more facts first. If you aren't a carrier and you and your spouse are worrying endlessly, thats not good for the baby. And it may be needless worrying.

And on the postive side, if it is cf-while you won't be happy about that of course-it is livable. Look and Lauren and myself-we're in our 20s with spouses, homes, normal jobs, and pregnant! Our lives are more complex and we need more time to take care of ourselves, but believe me its a life worth living and cf is not the biggest thing in our lives. So don' t worry-whatever happens, it will be ok.

 

[happylee]

What is normal these days?? My son was born with CF. Abortion was not an option for us either, however, we did not find out until he was born. He is the best thiing that has happened in our lives and I would not trade him for the world. He is a healthy, active, smart and handsome little man. His life is normal just like any other's, except that he has CF. He takes his Ultrase before each meal, his vitamin once a day and we do chest physical therapy for 5 minutes every morning. CF has thousands of variations, so there is no absolute therapy for all. It all depends on how well your child responds. There are so many advances in the disorder today and they will find a cure. Its normal to be scared, but once you see your child, and if they have CF, you will do whatever it takes to keep them healthy and your routine will be like everyday tasks. They do not look any different from other kids and they don't act any different than other kids. It has been a difficult journey in the beginning because it was new to us and it hit us like a brick wall. But the support system that your child is going to receive, should they have CF, is fantastic. Hang in there and I hope that you are CF free in your family - but if not, its not as terrible as you think. Its tolerable. Just love and support your child no matter what. And breastfeeding is very important to the future health of your child, especially should they have CF. Please let your girlfriend know that. Thanks and I hope this helped a little.

 

[happylee]

What is normal these days?? My son was born with CF. Abortion was not an option for us either, however, we did not find out until he was born. He is the best thiing that has happened in our lives and I would not trade him for the world. He is a healthy, active, smart and handsome little man. His life is normal just like any other's, except that he has CF. He takes his Ultrase before each meal, his vitamin once a day and we do chest physical therapy for 5 minutes every morning. CF has thousands of variations, so there is no absolute therapy for all. It all depends on how well your child responds. There are so many advances in the disorder today and they will find a cure. Its normal to be scared, but once you see your child, and if they have CF, you will do whatever it takes to keep them healthy and your routine will be like everyday tasks. They do not look any different from other kids and they don't act any different than other kids. It has been a difficult journey in the beginning because it was new to us and it hit us like a brick wall. But the support system that your child is going to receive, should they have CF, is fantastic. Hang in there and I hope that you are CF free in your family - but if not, its not as terrible as you think. Its tolerable. Just love and support your child no matter what. And breastfeeding is very important to the future health of your child, especially should they have CF. Please let your girlfriend know that. Thanks and I hope this helped a little.

 

[happylee]

What is normal these days?? My son was born with CF. Abortion was not an option for us either, however, we did not find out until he was born. He is the best thiing that has happened in our lives and I would not trade him for the world. He is a healthy, active, smart and handsome little man. His life is normal just like any other's, except that he has CF. He takes his Ultrase before each meal, his vitamin once a day and we do chest physical therapy for 5 minutes every morning. CF has thousands of variations, so there is no absolute therapy for all. It all depends on how well your child responds. There are so many advances in the disorder today and they will find a cure. Its normal to be scared, but once you see your child, and if they have CF, you will do whatever it takes to keep them healthy and your routine will be like everyday tasks. They do not look any different from other kids and they don't act any different than other kids. It has been a difficult journey in the beginning because it was new to us and it hit us like a brick wall. But the support system that your child is going to receive, should they have CF, is fantastic. Hang in there and I hope that you are CF free in your family - but if not, its not as terrible as you think. Its tolerable. Just love and support your child no matter what. And breastfeeding is very important to the future health of your child, especially should they have CF. Please let your girlfriend know that. Thanks and I hope this helped a little.

 

[usedtobeinca]

Fathertobe,
I was you one year ago. During routine genetic testing, it was found that my wife is a cf trait carrier. They rushed me in for a blood test and it turned out that I was too. We were stressed a little, but learning that there was still a substantial chance that the baby wouldn't have cf was comforting (75% I believe). Our superficial wants and desires boiled down to "we just want a healthy baby" in an instant. Abortion wasn't an option for us either, as were the risks associated with amnio. After declining the amnio, our doc told us about targeted ultrasounds they would want to perform to look for any of the bowel problems sometimes associated with cf.

At this point, definitely go get your blood test. Depending on thet outcome, it will be worthwhile to look into your insurance coverage (which it probably would be anyway).

Try not to be stressed about it - even after it turned out that I was a carrier too, we found a lot of peace with simply acknowledging that we'd made a decision and were sticking to it.

 

[usedtobeinca]

Fathertobe,
I was you one year ago. During routine genetic testing, it was found that my wife is a cf trait carrier. They rushed me in for a blood test and it turned out that I was too. We were stressed a little, but learning that there was still a substantial chance that the baby wouldn't have cf was comforting (75% I believe). Our superficial wants and desires boiled down to "we just want a healthy baby" in an instant. Abortion wasn't an option for us either, as were the risks associated with amnio. After declining the amnio, our doc told us about targeted ultrasounds they would want to perform to look for any of the bowel problems sometimes associated with cf.

At this point, definitely go get your blood test. Depending on thet outcome, it will be worthwhile to look into your insurance coverage (which it probably would be anyway).

Try not to be stressed about it - even after it turned out that I was a carrier too, we found a lot of peace with simply acknowledging that we'd made a decision and were sticking to it.

 

[usedtobeinca]

Fathertobe,
I was you one year ago. During routine genetic testing, it was found that my wife is a cf trait carrier. They rushed me in for a blood test and it turned out that I was too. We were stressed a little, but learning that there was still a substantial chance that the baby wouldn't have cf was comforting (75% I believe). Our superficial wants and desires boiled down to "we just want a healthy baby" in an instant. Abortion wasn't an option for us either, as were the risks associated with amnio. After declining the amnio, our doc told us about targeted ultrasounds they would want to perform to look for any of the bowel problems sometimes associated with cf.

At this point, definitely go get your blood test. Depending on thet outcome, it will be worthwhile to look into your insurance coverage (which it probably would be anyway).

Try not to be stressed about it - even after it turned out that I was a carrier too, we found a lot of peace with simply acknowledging that we'd made a decision and were sticking to it.

 

[Mommy2Alysa]

Fathertobe,

I would consider yourself lucky that you at least know there may be a CHANCE... before I had my daughter I had no clue that both my husband (boyfriend back then) and I were carriers and had never really heard of CF before.

I gave birth to a beautiful baby girl in April 2005 and was constantly worried about her. She didnt gain weight, was throwing up and constantly was sick and I was always at the doctor's office and hospital asking them to "fix my baby" after many months and lots of heartache my daughter got pneumonia when she was just over a year and a half and the fact that she couldnt shake it is waht triggered my doctor to give her the sweat test discovering she had CF.

CF is scary, I will not lie to you but it is treatable and honestly if you find out when your child is young enough they wont know anything different. My daughter is now 20 months old and knows she needs her physio, her enzymes and everything.

I wouldnt stress too much though until you find out you are a carrier. The chances of you passing CF onto your unborn child if you are NOT a carrier is slim. If you ARE a carrier then you have a 1 in 4 chance of your child having CF, a 1 in 4 chance that your child has nothing, and a 50% chance that your child is a carrier.

I am currently 4 weeks pregnant, scared out of my mind but completely happy. CF is a liveable "disease" and just think... it could be worse. There is no physically inhabition your child will have. I believe the only thing peopel with CF can't do si go in hot tubs (heat and germs and stuff) I have haerd of people becomming champion athletes. He/She will lead a regular life but will just need some special drugs to help them.

Please dont stress too much..... Take care.

 

[Mommy2Alysa]

Fathertobe,

I would consider yourself lucky that you at least know there may be a CHANCE... before I had my daughter I had no clue that both my husband (boyfriend back then) and I were carriers and had never really heard of CF before.

I gave birth to a beautiful baby girl in April 2005 and was constantly worried about her. She didnt gain weight, was throwing up and constantly was sick and I was always at the doctor's office and hospital asking them to "fix my baby" after many months and lots of heartache my daughter got pneumonia when she was just over a year and a half and the fact that she couldnt shake it is waht triggered my doctor to give her the sweat test discovering she had CF.

CF is scary, I will not lie to you but it is treatable and honestly if you find out when your child is young enough they wont know anything different. My daughter is now 20 months old and knows she needs her physio, her enzymes and everything.

I wouldnt stress too much though until you find out you are a carrier. The chances of you passing CF onto your unborn child if you are NOT a carrier is slim. If you ARE a carrier then you have a 1 in 4 chance of your child having CF, a 1 in 4 chance that your child has nothing, and a 50% chance that your child is a carrier.

I am currently 4 weeks pregnant, scared out of my mind but completely happy. CF is a liveable "disease" and just think... it could be worse. There is no physically inhabition your child will have. I believe the only thing peopel with CF can't do si go in hot tubs (heat and germs and stuff) I have haerd of people becomming champion athletes. He/She will lead a regular life but will just need some special drugs to help them.

Please dont stress too much..... Take care.

 

[Mommy2Alysa]

Fathertobe,

I would consider yourself lucky that you at least know there may be a CHANCE... before I had my daughter I had no clue that both my husband (boyfriend back then) and I were carriers and had never really heard of CF before.

I gave birth to a beautiful baby girl in April 2005 and was constantly worried about her. She didnt gain weight, was throwing up and constantly was sick and I was always at the doctor's office and hospital asking them to "fix my baby" after many months and lots of heartache my daughter got pneumonia when she was just over a year and a half and the fact that she couldnt shake it is waht triggered my doctor to give her the sweat test discovering she had CF.

CF is scary, I will not lie to you but it is treatable and honestly if you find out when your child is young enough they wont know anything different. My daughter is now 20 months old and knows she needs her physio, her enzymes and everything.

I wouldnt stress too much though until you find out you are a carrier. The chances of you passing CF onto your unborn child if you are NOT a carrier is slim. If you ARE a carrier then you have a 1 in 4 chance of your child having CF, a 1 in 4 chance that your child has nothing, and a 50% chance that your child is a carrier.

I am currently 4 weeks pregnant, scared out of my mind but completely happy. CF is a liveable "disease" and just think... it could be worse. There is no physically inhabition your child will have. I believe the only thing peopel with CF can't do si go in hot tubs (heat and germs and stuff) I have haerd of people becomming champion athletes. He/She will lead a regular life but will just need some special drugs to help them.

Please dont stress too much..... Take care.

 

[LouLou]

Mommy2Alysa,

I think you are downplaying the realities of cf. It's good to be optimistic but to say it's a "liveable disease" is just not fair to many cfers that have aweful lives that result in a brutal, early death. I have a wonderful life that I am very proud of but each day I struggle to breath at some point. I spend 3 hours a day on my care when I'm well. Also, where do you get that cfers can't go in hottubs?

It's safe to say cf outcomes vary greatly. Do you know what your daughters mutations are? Just to clarify, in case no one has ever told you, cf can be avoided in your future pregnancies by selecting out the sperm that carry cf and only implanting those that are cf carrier free into you. This is IVF. It's so excepted now that most insurances will pay for it because it will save them soooooo much money to not have to cover another cf patient. Many cf carrier couples would abort if an accidental pregnancy happened. Prepare yourself for questions from your daughter why you didn't take precautions to not bring another cfer into HER home. Personally I would be pissed at my parents had they continued to have children....rolling the dice so to speak. For myself, I wouldn't choose abortion but people shouldn't be frowned upon for not wanting to bring a cf child into the world.

The median age of life expectancy (SURVIVAL) is 36.8 years.

 

[LouLou]

Mommy2Alysa,

I think you are downplaying the realities of cf. It's good to be optimistic but to say it's a "liveable disease" is just not fair to many cfers that have aweful lives that result in a brutal, early death. I have a wonderful life that I am very proud of but each day I struggle to breath at some point. I spend 3 hours a day on my care when I'm well. Also, where do you get that cfers can't go in hottubs?

It's safe to say cf outcomes vary greatly. Do you know what your daughters mutations are? Just to clarify, in case no one has ever told you, cf can be avoided in your future pregnancies by selecting out the sperm that carry cf and only implanting those that are cf carrier free into you. This is IVF. It's so excepted now that most insurances will pay for it because it will save them soooooo much money to not have to cover another cf patient. Many cf carrier couples would abort if an accidental pregnancy happened. Prepare yourself for questions from your daughter why you didn't take precautions to not bring another cfer into HER home. Personally I would be pissed at my parents had they continued to have children....rolling the dice so to speak. For myself, I wouldn't choose abortion but people shouldn't be frowned upon for not wanting to bring a cf child into the world.

The median age of life expectancy (SURVIVAL) is 36.8 years.